I have a question. I'm assuming I have neurological damage from having lyme for so long and not being diagnosed (5-6 years).
A lot of the times I feel goofy - uninhibited, impulsive, "out there", and odd. This must be that damage.
Does anyone else have this? Can this type of damage be healed?
Do I need to do something different? Any recommendations on what supplements can heal "regenerative nerve" tissue? (I know not all nerves are this way).
frowny face.
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Carol in PA
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Lack of inhibition.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Carol - Care to elaborate?
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TF
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If you also have times of having your normal inhibitions and self-control, then that means that your nerves are not permanently damaged.
The fact that you are normal sometimes and sometimes not means that lyme is sometimes attacking those parts of the brain and sometimes not.
I had a friend who had such brain fog that she worried she would never get her normal intellect back. The lyme doc told her that if she still had periods of clarity, she could guarantee that she would get her normal intellect back.
My friend had not had any periods of mental clarity for a long time (months to a year). Still, I am very happy to report that with good lyme treatment she got her normal brain back.
It was wonderful!
So, don't think negatively. Permanent brain damage is characterized by abnormal inhibitions and self-control ALL OF THE TIME. I believe that your brain will be totally fine if you get good treatment because you are just feeling abnormal "a lot of the time," and not all of the time.
By the way, my friend likely was born with lyme. She was given the diagnosis of fibro. Her mother also had that diagnosis and every one of her sisters. Her daughter also got the fibro diagnosis by the time she was 20 years old.
So, most likely her mother had lyme and gave it congenitally to her and all her sisters. Then, my friend gave it to her unborn daughter. Three generations of fibro-lyme disease.
This friend was about 50 when she found out she had lyme. Still, she got her normal brain back. That is 50 years of undiagnosed lyme disease!!!
I had undiagnosed lyme for at least 10 years before a doctor figured out what was wrong with me. Still, I got my normal brain back with good lyme treatment.
So, don't assume neurological damage. Assume that you have a disease that is attacking your brain and nerves from time to time. That is what lyme is. Here is a quote from Burrascano on the subject:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4)
Five or six years undiagnosed is not that long. In fact, I believe that the more a person knows about lyme, the further back they will place their estimated start date for this disease.
I first believed my lyme started with my "menopause" (that wasn't) diagnosis. But, as I learned about lyme, I saw that it went back much further than that--to the first time I got a strange attack of extreme muscle weakness that lasted for months.
My lyme doc had me take sublingual (under the tongue) vitamin B for my nerve symptoms.
Burrascano names vitamin B to help nerve symptoms. See page 28, list of required supplements.
Also, be sure to read page 29 where he lists additional supplements for neurologic symptoms. NT-Factor, ACETYL-L-CARNITINE- (this is taken along with SAM-e), METHYLCOBALAMIN (Methyl B12), green tea, Cordymax, and CITICHOLINE.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - I'll reply in greater detail later, but in all honestly, I haven't had a day of "normal" clarity since 2004 or 2005. I don't know then what is "permanent", you know?
I only recognize that these things are "odd" behavior. I don't know that I am 'ok' and 'not ok'. I feel handicapped with some parts of my thinking. It's weird. And just because I'm literate, its hard to convey online.
I take methyl b12, btw. NT Factor didn't seem to do much.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Is there a way to know if you have nervous system damage, quantifiabley or absolutely?
For example - MRI, SPECT, anything?
How do you get "ok"?
:-(
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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TF
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Yes, brain scans will show damage. See page 4 of Burrascano:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system. Thus, careful evaluation may include neuropsychiatric testing, SPECT and MRI brain scans, CSF analysis when appropriate, regular input from Lyme-aware neurologists and psychiatrists, pain clinics, and occasionally specialists in psychopharmacology."
For example, I had 2 UBOs (unidentified bright objects) show up on my brain scan. These are generally believed to be areas of hypo-perfusion (evidently low blood flow due to the inflammation caused by lyme in the brain). Others are told they have X number of lesions on their brain, just like many MS patients are told.
Want you to know that in spite of me once having 2 UBOs, I now have my regular brain back!! Yep, it's back and it's been back for over 7 years now!!!
So, the damage from lyme is nearly always reversible.
Some people with terrible numb limbs undergo tests of the nerves to those limbs. Results may show damage.
The thing is, with good lyme treatment, generally all of this reverses.
How do you get OK? You go to the very best lyme doctor you can afford. I recommend one who follows the Burrascano protocol.
With good treatment, the body heals. The Burrascano protocol is a 4-pronged approach:
antibiotics supplements diet exercise
All 4 are necessary. Look at Burrascano's supplement list starting on page 28. See how many are for the nervous system. They really work. They worked in my case.
Think of this: I once got my fingers chopped up in a meat cuber. I definitely had nerve damage to those fingers. The fingers didn't have normal feeling, were very sensitive to cold, touch, had pain just putting my hand in my purse and touching the objects in there, etc. But, over the years, the nerves healed. Now, I don't ever think of it. The fingers are normal (except for the barely noticeable scars).
So, that is just an example of how the body heals itself. It is miraculous.
Don't know what state you are in, but you could call the lyme support groups in that state and ask them who follows the Burrascano protocol.
Or, you could go to one of the big name lyme doctors in the country so that you KNOW you are getting GOOD Burrascano treatment.
If you are willing to travel, I can give you some great names on the east coast. Just let me know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I've had a SPECT. I have -3 to -4 Standard Deviations for perfusion (I'm familiar with the terms) in the frontal lobes and hippocampus regions of my brain. This is somewhat common for Lyme-O's. So I know that I have something... but is it DAMAGE or just inflammation?
Did you get your hypo-perfusion to go away (confirmed via SPECT)? Did you ability to remember and recall improve? Thought improved?
I don't know that my doctor specifically follows the Burrascano guideline, but he seems to do most of it as he thinks it helps. I've been on ABX for about 3 years. I take a lot of the recommended supplements. And I exercise a decent amount. Its just the neuro stuff I can't handle. I take lithium orotate because it supposedly helps increase brain mass, etc.
Would you mind PM'ing me some of your docs? I can tell you the name of mine as well.
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Carol in PA
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thehause, Which kind of fish oil are you taking?
I noticed an improvement in my ability to think when I started the fish oil again. Aim for 2000 mg of EPA daily.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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I take the generic fish oil from Costco (that isn't bad, really).
It is 1000mg of oil, with 300mg being "omega 3".
You take 2000mg of oil or EPA? That would be a lot of oil, if you take 1000mg of EPA.
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Carol in PA
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Yes, that would be alot of oil, but if you look at the list of ingredients for the ones I posted, you'll notice that the amount of EPA is very high.
Aim for 2000 mg of EPA.
I did use a generic brand of Omega 3 Mood, but it did not work as well to reduce muscle and joint pain. I thought maybe it was my imagination, but then I saw a review that noted the same thing.
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TF
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My ability to remember and my ability to think all went back to normal. My derealization and strange emotional reactions and lyme rage all went away.
I don't know how to say it except to say that I am now exactly like I was before lyme disease.
If you want to foot the bill for a spect scan to see if my UBOs are gone, then I will get one for you to see. All I know is all of my mental and emotional problems are gone and have been gone now for 7 years.
Send me a private message telling me what state you are in and your doctors names. I'll tell you who I recommend.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I would love to foot one of your bills... but we would have to turn it into "our" bill for insurance purposes. See you in vegas then.
Thanks for the information. Glad you're better. I need to get better
I've been dealing with all of this essentially on my own, while trying to work and cope and date and live... my level of education falls behind at times. My ability to research does as well.
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TF
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Here is an article on a Canadian Lyme site that talks about lyme patients who had follow up brain scans and whether the original findings (lesions, hypoperfusions, etc.) disappeared or not after lyme treatment.
You may be interested in this. I glanced through it and it appears that the doc is concluding that more studies need to be done on the subject.
posted
I am probably having a lyme moment but i can barely read this / hold it in my mind.
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CherylSue
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Thanks TF for sharing your experiences. You made me and many others more hopeful.
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